The Great Cancer Recovery part 5

[Topofthecliffs]

Amazingly we have now filled four threads and are ready to start again. How time flies when you are being purposeful! Come and join in.

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!
Here are some resources we found helpful:
The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/
Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward
Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html
Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/
Exercise is good for you:
^https://www.webmd.com/cancer/features/exercise-cancer-patients^
Any more suggestions? Post them below

(There is a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat, and you are welcome on any or all of these)

Oh no @MrsSqPenguins I hope you are okay. Your weekend sounds much nicer than mine. We had a whole lot of claggy fog and drizzle and we were both fed up and grumpy. I did some weeding and some boat maintenance but am pining for sunshine. Yesterday I got back on my bike in the fog and led a ride through the lanes which was fun but still no sun. Today was better and I rode over the big hill near me twice so am now shattered lying in bed with tea and a book. DH has finally got his new van and has gone off on a short trip to test it out, back tomorrow, which is quite restful for me. My fitness has dropped badly with all the poor weather and dogsitting so I am going to work hard on that for the next week or two. I actually felt quite faint today after the hill climbs so won’t push quite as hard. Once I have rested up I may start booking a cycle tour of the Hebrides. I will get fitter! Also I am still a stone heavier than my target last year so I need to get back on track with the healthy eating. This healthy living thing is such hard work!

I love hearing about everyone's gardening and exercise activities, I've got a lot of both to do so it's encouraging.

I think I've almost got my exercise sorted. I do yoga 2x a week, also body balance and gym twice. I had been swimming twice a week but that was overdoing it, my hips and bottom seized up so I'm walking instead for now. Luckily two of my friends want to walk regularly so I have company. And bike rides if it's not raining and we're both free (not often). Good job I don't have to go to work!

I got my DXA scan results today, it seems I'm ok for my age but DH told me I've got to do lots of weight bearing exercise forever which I don't mind, I'm quite enjoying my current regime though I'm very tired too. Much decluttering here too, both parental houses going on the market. One day everything will be sorted...

I agree healthy living is hard work @Topofthecliffs I've not quite worked out how to lose weight yet have a calcium and fibre rich diet, it's slow progress. The AIs have messed up my metabolism so weight loss has had the brakes put on. I'm hoping my big bike ride in May will help.

I'm also enjoying hearing about everyone's adventures (and life saving skills!).

I hope the full refund got sorted @MrsSqPenguins

I had my annual mammogram recently which was fine and I didn't really think about it much beforehand, which is progress. I'm also waiting for an MRI for hip and back pain, there is talk of inflammatory arthritis but hopefully it's a false alarm and I just need to stretch more....

Thanks @demivolt Glad the mammo was fine. I think the pains and MRI are very common too, joys of menopause and bones getting more worn out following treatment but we have to check but normally all clear.

Glad exercise is going well @LknCheese

You seem very fit already @Topofthecliffs Hebrides sounds lovely.

I am having the joys of COVID here, I have not really been ill since 2022 and this has hit DH and I like a tonne of bricks. But a lovely new GP has started who gave me Paxlovid, chemist had to order it in, now had a day of it and my COVID rash has gone. It gives me a bad stomach so I still feel very grim but 4 days to go.

DD is coming home from university for Easter this weekend though off to 3 rowing camps so won't see her that much. Still trying to get the flights refunds, about 7 more forms to fill in, 1 gone through and about 3 nothing happening with. Cat is being really lovely with me, snuggling, not asking for his morning tuna as I am sick, just really gently tapping his big white paw on me but he is not impressed with DH being ill too and whacked him. DS so far is fine though was happy he didn't take his hour long night bath for muddy wild pigs in our bathroom last night as I need it. I have embraced the 1970s and am drinking lucozade as throat blocked but they changed the recipe, not that I can taste things properly now. Not sure we will be gardening this weekend but did have 200 litres of compost and lawn seed delivered.

I hope the Penguin family are over their Covid and are recovering @MrsSqPenguins . It knocks you back!

I have been staying with DM for Mothers Day and have sorted out her hearing aids and ear wax and tidied up while hunting down a lost aid. She is great company and sharp as anything on the crossword clues. It’s just remembering short term that she struggles with. DH came over and fixed a broken castor for her but has set off to cycle back home today 75 miles. I will see him later.
It has been lovely and I am so lucky to still have my funny kind loving DM.

I am still feeling a bit off, with aching muscles and odd balance. I guess this is just all part of life now and I need to slow down a bit. I’m babysitting my GS on Wednesday so maybe that’s the new normal for us pensioners. Despite that we put up our scaffolding tower at the front of the house and DH has been up and down clearing gutters and bashing his head on it!

Spring is coming! I am so looking forward to better weather.
Love to all the Recoverers x

Glad you had a nice time with your DM @Topofthecliffs

We are still a plague house here. I have finished the anti-virals now but am on day 8 of covid and still quite grim. DH is on day 11 and better than me but still unwell. Last time we had it or any illness or a vaccine was 2022 so we have catching up to do but hopefully 3.5 years off again after.

Got the full refunds approved for all the flights now so just seat bookings to go through and those were only £200 total so not too bad either way.

DH got DD back from Oxford on Saturday and she spent Sat / Sun with us then left at 5am for a rowing camp and DH dropped her at the train station. Lovely to see her and she is back on Friday. Hopefully she has avoided the covid and we will be better by Friday. She is working punting on Saturday and Sunday then various other rowing events and another rowing camp mid April. She has a rowing coaching job. She's going to the Head of the River Event and the Boat race and after party. She also tells me she plans to sort her room, this I will believe when I see but at least the thought is there.

Hello all, so sorry to hear you’re still not well @MrsSqPenguins. Hope you all recover soon. Has ds caught it?
So lovely to hear about your time with your DM @Topofthecliffs. Sorry you’re not feeling 100%. I certainly find little things knock me off kilter - twinges in the back, troubled sleep… and needing to build in margin between long days out.
Enjoying the glorious spring flowers and promise of more.

Thanks @thesandwich. DS is still wandering the garden and downstairs a lot and a flurry of activity like we have a resident mole tunnelling and just appearing in random places, eating fine and appears to be well. Taking his night baths.

Also loving the spring flowers from my window but desperately want to be well enough to go out and garden. We are improving but very weak, out of breathe, shakey, achey and stomach symptoms on and off. Did manage a bath today, washed the bedding and joined a seminar for an hour but mostly half dead or ill.

Sorry to read you've been so unwell @MrsSqPenguins I hope you're feeling a little bit better today?

I'm still struggling with fatigue. I fell asleep with a cup of tea in my hand yesterday 😬 Had an appointment with my oncologist a couple of days ago, he said all my bloods look fine (blood test done for my Zometa the week after next), but is doing a thyroid function test, too. He thinks it's probably tamoxifen side effects (I had a whole list!). I had a bleed 😬 so have been referred to gynae, too. My oncologist has suggested a 6 week holiday from tamoxifen, then restarting at a lower dose. Has anyone else done this?

@BatshitCrazyWoman it is always hard to know which symptoms are caused by which treatment mode. When I started anastrozole I had awful joint pain and fatigue but was still on Herceptin injections and Zolendronic acid infusions. After a year I had a month off and felt so much better that they switched me to exemestane. This didn’t cause as much joint pain so I stayed on this for another four years. Now I have completed the five years treatment I have been off all drugs for three months. Generally I am getting better with thicker hair, less morning stiffness but I still have evening neuropathy pain from my hands and feet and my joints still ache. I think it is generalised osteoarthritis that was coming on post menopause before my cancer diagnosis and has rumbled along in the background throughout. Interestingly it went away completely during chemotherapy. Good luck with the six weeks off, it will be interesting to see if it makes a difference.

I am stiff today after a very intense Pilates session on Wednesday. It must be doing me some good! I can see my body shape is altering slowly for the better.
I am currently in a nice hotel up north on my way to a sporting weekend. DH is cycling from here while I drive his lovely new van. We made it past the New Year accident site yesterday with some trepidation. The hotel where the weekend gathering takes place has a pool and health spa so I am looking forward to it.
I am currently drinking coffee in bed with the news on. While losing anybody to meningitis is a tragedy it is sobering to realise that there are around 30 deaths a year from invasive meningitis while around 1700 die in road accidents and 160000 die from cancer! If I was a public health expert I would be looking at the cost effectiveness of interventions with a beady eye.

Hope you are getting out in the garden in the sunshine @MrsSqPenguins
I managed to plant some beans and raspberry canes before I came away. There is so much to be done outside now it has finally stopped raining!

It will be interesting to see @Topofthecliffs My oncologist seemed to think quite a lot of my side effects would probably go away, as they are very definitely side effects from the drug. I felt really well after chemo and surgery, but before tamoxifen! We shall see.

Enjoy your weekend away @Topofthecliffs

I am still recovering from COVID but hoping to get out in garden tomorrow. It's just the aches, tiredness, breathing and itchiness to go and taste is still off. DS had a night bath and I cleaned the bathroom but I get out of breathe really easily. I will try the garden as want to get outside and it's lovely now with all the bulbs in flower. Luckily we are only one gardening session behind and that one was dubious anyway as it was day after collecting DD and her stuff from university. She's been off to rowing camp this week, gets paid as a rowing coach, and back late tonight. She is working punting both days this weekend. We have a lovely new cleaner who comes for a couple of hours each week, had her three times now and she is great and twice DS has cooperated with her which is encouraging. We need to pre clean especially DSs bathroom but it does help and it gets DS used to someone else.

Sorry about the symptoms @BatshitCrazyWoman Not had bleeding but does worry me the lack of ovarian checks on Tamoxifen. I did 6 weeks off once and realised none of my symptoms were from it but that's useful in itself. Wasn't meant to be 6 weeks but things got postponed.

I am losing weight a bit and COVID has helped with that. Though now I was going through holiday clothes and realised I need to buy smaller ones. I have lost about 2.5kgs since mid January so slow and would ideally like to go down another 3.5kgs to be weight I was in 20s/30s/ early 40s. It's not essential but ideally would like. Will be the world's slowest diet.

Managed 4 hours gardening and cleaning of downstairs floors with DH. This is back of the garden. We have nearly completed all 3 paths with 5 slabs to go. Did some lawn seed and compost, digging today and clearing leaves and cleaned paths. Lovely day and silkies came too.

That’s great @MrsSqPenguins I can see how it will protect the grass areas. You deserve to put your feet up!
I had a fab weekend up north with some brilliant speakers at the conference. One spoke about dropping negativity and letting in joy. It resonated with me and today I had a lovely ride with friends and was full of joy in the sunshine!

Tomorrow I am meeting DD for a late Mother’s Day lunch. There is lots going on but most of it is good. Long may it continue!

Glad you had a good weekend and have a lovely lunch @Topofthecliffs

Hi everyone
Hope you're all ok and enjoying the Spring weather.
Quick question- due to my ongoing neuropathy in hands and feet I am on gabapentin 900g daily.
I struggle to stay asleep at night and I find that after walking my dogs( slowly!) on the fields that I am beyond exhausted and struggle the rest of the day.
Is this normal after cancer?
Should I go back to my G.P?
I'm 20 months after the end of treatment.
Thanks in advance. Xx

Are you on tamoxifen @Zoopet ? Fatigue was one of my main side effects.

I'm currently on day three of my 'holiday' from tamoxifen (with my oncologist's blessing). I feel bloody great, and I was still awake at 10 pm last night, and didn't have any daytime naps.

No, just gabapentin.
Just a bit fed up of feeling under par all the time, even after going for a slow walk.
Thanks for replying. X

Zoopet I am 4 years out and yes can stay awake at night, I normally sleep at some point but sometimes resort to anti histamines to get me to sleep. It doesn’t bother me too much.

Exhaustation well after treatment I was fine swimming but initially struggled walking getting out of breathe bit like asthma. Swimming could do a mile straight out of radio. After a while once swimming 3 times a week for maybe á year I found walking much easier. Now I can walk for about 2 hours in one go and dont get breathless but at that point get hip pain.

it maybe worth getting some bloods done though to see if anything else. I don’t get tired now. I just take tamoxifen now but not had much issue with it other than unmedicated menopause and its joys. Have a bit of neuropathy from chemo but slightly annoying more than stops anything and am used to it now.

Gabapentin can be quite sedating, so it might be that. You are on a high dose @Zoopet . Maybe have a chat with your GP about reducing it a bit?
I took amitriptyline for neuropathy but it made me very dopey so I came off it. I manage with a paracetamol at bedtime but I do still get pain.

I had round three of the battle to save my tooth today. It was two hours of poking and grinding and the dentist nearly gave up as it was technically difficult. Thankfully she persisted. Afterwards I had to go home and lie down and am now watching The Other Bennet Sister and feeling feeble. The final dental round is in two weeks. I was very brave!

Thank you @Topofthecliffs
I actually am on 900mg x3 each day as my neuropathy is awful, so I'm loathe to reduce it.
I also have a foot machine that sends electrical pulses through my feet.
I think I'll just have to get on with it and keep myself busy- it's always worse when I'm by myself ( I live alone.)
I did try amytryptiline but no joy sadly!
Onwards and upwards!

Hello everyone,

Sorry for not posting in ages, I have been reading your messages though. It's nice to hear how you're all doing.

I completed my treatment plan last summer, but the last year or so felt much easier - it was the years of chemo and targeted therapies that were so horrific. Radiotherapy was ok, daily for 3 weeks. Surgery was ok although I have ongoing side effects from that - they removed all the lymph nodes they possibly could. Not on any cancer treatments now as my cancer wasn't hormone sensitive.

Like a lot of you here, I prioritise exercise; I enjoy it so that isn't difficult. I get so tired though, so when I exercise that's sort of it for that day. I like aqua, swimming, TRX, reformer Pilates, mat Pilates, yoga, strength training etc. I started with just swimming and gradually rebuilt enough self confidence after the treatments and onslaught of cancer to do more and more different things.

Zoopet, the Marsden offer acupuncture, Botox, Gabapentin, Pregabalin, and Capsaicin for CIPN, but they don't always help. I know people who have found various different ones of those fairly helpful at least. My neuropathy was unbearable in 2022 - 2023 and into 2024. These days it's ok. I did acupuncture and simply time can also sometimes help. Such a horrible side effect isn't it. I really hope it improves for you.

@SummerCycling thank you.

Hope tooth is sorted soon @Topofthecliffs

Glad last year has been better @SummerCycling

We are just back home from a week in Là Gomera where is was about 20C all week. We did a lovely dolphin and whale boat trip and saw bottlenose dolphins, pilot whales, Bryde whales and flying fish. Also went kayaking along coast, to Garajonay national park, hired a Fiat 500 cabriolet and toured the island, swimming in outdoor pool which has views to á snowy mount Teide and spa 3 times.

Hope everyone has a good Easter.

It sounds like a fab trip @MrsSqPenguins, great pictures.